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7255RE: [huntington's at risk] A new idea

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  • Terry Hagopian
    Jul 25, 2012
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      Thanks Dave
      I was a Pharmacy tech for State of CA, diagnosed in 2007 at UCLA with Dr Perlman at westwood Center of axcellance.
      I dont wk on Medicare now and am clueless about resources. I have a daughter in the army and five grandsons , ONE adopted special needs child. I am now on ssi a fixed income of $750 a mth, taking care of everybody still, Medicare costs more too. have Access for transportation.

      Terry Hagopian
      (562 ) 867-9521


      To: HUNT-DIS@...; huntingtonsatrisk@yahoogroups.com
      From: SpikeTDog@...
      Date: Tue, 24 Jul 2012 15:03:02 -0500
      Subject: [huntington's at risk] A new idea

      This idea appeared on another on-line support group. I think it's a great

      ">> Here is what I'd like to see from HDSA. I think the helpline is a good
      start for those who actually live someplace where there is help in the form
      of resources HDSA knows about like Centers of Excellence, support grousp,
      the Physicians Guide, etc. But what about those who don't have access to any
      of those or who are already plugged in and still need help?
      >> I would love to see a person or persons hired (we have some awesome
      >> candidates on this list) who are the eyes and ears to compile a list.
      >> Families could call or email with nursing homes, local non HD programs
      >> that help, day care centers, free prescription medication programs, etc.
      >> and a comprehensive list could be compiled by local, state, regional, or
      >> national status. This would be absolutely invaluable if it was updated
      >> and fluid and not ancient. The HD community at large would be the ones
      >> responsible in part for offering resources though those working on the
      >> list would of course ferret out resources and confirm those called in by
      >> HD families.
      >> There are dozens of stay at home caregivers who would love a part time
      >> job and love to contribute to the caregiving cause this way. What do you
      >> guys think?"
      >> --

      Illinois Chapter TEAM HOPE-Walk For A Cure
      Ill. Chapter-HDSA Web Page
      Sponsor Dave & Susie's Walk

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